just right for Luke
the right place, the right team and the right approach help a teen live a normal life
Cystic fibrosis is typically diagnosed at birth through standard newborn screening. But Luke Bemus is unusual. His family was told that he had asthma and seasonal allergies as a young child, but when he came down with pneumonia at age 7, testing revealed that he was actually suffering from cystic fibrosis.
Gary Mueller, MD, a Dayton Children’s pulmonologist, says the diagnosis “came as quite a shock to everybody.”
Additional testing showed that Luke had at least two other autoimmune diseases – celiac disease and liver disease – as well as an enlarged spleen. These secondary complications aren’t common, says Dr. Mueller. Unfortunately for Luke, this was his new reality. “Luke rolls with the punches,” Dr. Mueller says. “He took it as a challenge.”
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. More than 30,000 people in the United States live with the disease, and 1,000 new cases are diagnosed each year.
For For Luke, who is from Sidney, OH, and other kids in the region, there is a resource close to home that offers specialized care for this life-long disease – the Dayton Children’s Cystic Fibrosis (CF) Center, which is accredited by the National Cystic Fibrosis Foundation.
The CF Center sees about 100 pediatric patients every year, including newly diagnosed infants, children and teens. The center even sees about 70 adults who have been living with cystic fibrosis for decades. The doctors and staff are active in research trials, education and outreach opportunities for families.
Luke’s dad, Dave, says that the Dayton Children’s care team always encourages Luke to stay active, to play and get outside. They never treat him like he’s sick, and that approach is just right for Luke. “Sometimes he gets tired,” Dave says. “Sometimes he says he feels like he’s breathing through a straw. But that doesn’t discourage him. He doesn’t want to get special treatment.”
Luke is 15 now and still has regular stays at Dayton Children’s that can last from two to four weeks at a time. This past March, Luke had his first experience staying in the new patient tower, in the 8th floor specialty pediatrics unit.
“We absolutely loved the space and privacy that the new tower provided,” says Luke’s mom, Tammy. She says that, compared to the rooms in 3 West where he used to stay, the new rooms are impressive. With large windows letting in natural light, the spacious private rooms offer conveniences such as the Get Well Network, an all-in-one streaming television and video education system that can be personalized to each patient’s care plan. These changes – both big and small – reaffirm to Tammy that Dayton Children’s is the best place for Luke.
“We are so thankful for all the staff of Dayton Children’s to make our stay as comfortable as possible but we are just as thankful for all those that have made it possible to have such a wonderful hospital in a community so close to home,” says Tammy. “We have had several experiences with other children’s hospitals in other areas of Ohio and in other states, and I can tell you first hand that Dayton Children’s is our second family. They do go above and beyond to help our family.”